Our Autism Journey: Gentle Reflection from Parenting

Every autism journey begins differently. And in every journey, it is deeply personal because every parent experiences it differently.

During this Autism Acceptance Month, STEP has reached out to a parent of an autistic child to share their journey. We reached out to a mum of an young teenager who are currently attending school.

This mum first noticed that something was different about her son when he was around 1.5 years old. The main difference she noted was the way her son was playing with toys were not quite the same as other children. Not only that, his behaviours also were not like other children.

This led to genuine curiousity and also concern. She knew that something was different, but she was not able to describe it that time as the awareness about autism was not prominent. This mum eventually brought it up to a paediatrician during one of her son's sick visits.

In the early days, she honestly shared about her denial, and she held on to the belief that everything was fine. But deep down, noticing certain differences in how her son behaved and responded, she started to question and seek for answers to what was "wrong" with her son.

Upon reflecting on the question "was there anything you wish someone had told you earlier?", she had said that she was initially advised to wait until her son was 3, but she wished she had sought for a second opinion earlier. "It would have helped if someone had guided me to explore other options sooner, so I could better understand his needs and get the right support as early as possible," she wrote.

The most challenging part of her journey together with her husband was managing their son's tantrums and keeping up with all the therapy sessions. It was emotionally and mentally exhausting. These were times when they would feel very lost and lonely because no one around had a child with autism at that time, so she had no one to turn to for advise or support. It was also financially tough as her husband had to work extra to support the therapy costs.

Overtime, her understanding of autism changed a lot and she learned that every autistic child is different even within the same spectrum. She's become more empathetic and when she see a child having meltdown in public; understanding comes first rather than judgement. "I was once in their shoes, and the most helpful thing others can do is to be understanding and not interfere."

Reflecting upon positive moments, this mum shared that there are so many moments that made her proud and happy. One of the biggest moments was when her son finally started eating rice at 11 years old, and when he became more open to trying new food. His independence has also improved tremendously－he is able to get ready for school on his own, iron his uniform, cook simple meals, and even do his own laundry.

Sharing about the experience of getting an OKU card for her child, she shared at at first both her husband and her questioned whether they were making the right decision. It came with a lot of doubt and emotions, and she was worried that it might limit their son's opportunities or mean giving up on a "normal" path of living.

However, getting OKU card turned out to be the best decision for him. Being placed in a more suitable learning environment like PPKI has helped him feel safer, more understood, and less anxious. OKU card is not something to be ashamed of, she shared. It doesn't define your child's limitations, but instead provide access to the support, resources, and opportunities your child truly need. It also offers financial assistance in the form of monthly allowance which helps ease the burden for family.

Throughout their journey as a family, of more than a decade, STEP has gotten this mum to reflect:"If you could say something to yourself throughout this parenting journey with an autistic child, what would you tell yourself?"

And this mum shared that:

"I would say to myself that 'You've done a good job.' I'm proud of everything I've done for my son, even during the hardest moments. I would thank myself for not giving up, for staying strong, and for continuing to do my best for him every single day. All the sacrifices, the worries, and the challenges were worth it, because seeing him grow, happy and thriving means everything."

Written with care and intention,

Mary Jane

Disclaimer:

This story is shared with permission from the parent. Some details have been adapted to protect the family’s privacy, while preserving their experience. Every autism journey is unique, and this reflection represents one family’s perspective.